More than 60 years ago, Henry H. Kessler, MD, founded the Kessler Institute
of Rehabilitation, a hospital for people with disabilities. In 1985,
he created the Kessler Foundation to continue the mission. Since then
the foundation, headquartered in West Orange, NJ, has funneled millions
of dollars into programs that promote injury prevention for youth, as
well as employment opportunities for people with disabilities. Its research
center focuses on improving function and quality of life for people
with spinal-cord and traumatic brain injuries, stroke, multiple sclerosis
and other neurological and orthopedic conditions.

Chet Cooper: How would you characterize the goals of the Kessler Foundation?

Rodger DeRose: When I came aboard, about four years ago, we were two
separate organizations: the research center and the foundation, which
was the research centers primary funder. At that time, the charge
was to merge both organizations, and to focus on improvement of the
functional capabilities of people who have
disabilities by way of rehabilitation for people with brain and spinal
cord injury, multiple sclerosis or who had experienced a stroke.

We had two drivers: expansion of employment and improvement of functionality,
so that people with disabilities might enjoy a higher quality of life.
We decided we would turn our attention to rehabilitation care and translational
research, because if youre sitting in a wheelchair for 20 years
and you lose bone density and muscle mass, it doesnt matter if
youre suddenly able to walkyoure not going to be able
to stand for very long.

Cooper: Its not, you might say, sustainable.

DeRose: Right. The uniqueness of our organization is the research component.
Several of our patients say things like, I came in here and I
couldnt walk, and I couldnt communicate with my loved ones.
But now Im able to talk with family and get out of my wheelchair
and stand. There are some cases in which we cant make dramatic
changes, but we certainly try to.

In terms of expansion and employment, we fund other nonprofit organizations
that present business plans and ideas to us that are sustainable, and
could create jobs for people with disabilities. We created thousands
of jobs in New Jersey during the first eight years after we sold the
hospital, and were now at the point where were starting
to expand nationwide.

Cooper: What kinds of business plans and concepts are you looking to
support?

DeRose: If a business is training people to enter the marketplace and
find employment, that is the return on investment were looking
for. Were trying to demonstrate that people with disabilities
can service their communities, become taxpayers, and give back in a
meaningful way. Thats what were about. Our research tries
to improve function and reduce secondary complications, so that an individual
can get back out into the community. Meanwhile, another part of the
organization looks for ways to integrate individuals into the community
through work.

Whenever you go to a party, youre asked your name and then what
you do. Unfortunately, 80 percent of people with disabilities are unemployed.
If we can set an example for other large foundations to get involved
around employment, it will help demonstrate that people with disabilities
can achieve great things.

Cooper: And youre expanding nationally?

DeRose: We are. We will soon review grants proposals, choose recipients,
and then disperse funds to organizations across the country over a two-year
period. These are large, signature grants valued at about a half-million
dollars. Its enough to help some of these other nonprofit organizations
get the kind of funding they need to generate a concept, show proof
that an idea will work, and then go out and secure additional funding
from other organizationsor from their statesthat will leverage
the funding that we gave them.

For example, we gave Hudson Community Enterprises in Jersey City, NJ,
funding to start a document-management organization and, over the last
four or five years, theyve created a business that reaps millions
of dollars and generates profits that are being plowed back into hiring
more people with disabilities so the business can expand. They have
leveraged our money at least four- or fivefold, in addition to the revenue
streams they receive from their clients.

Cooper: Isnt there anyone saying, Okay, if that works in
Jersey City, why shouldnt it work in Denver or Miami?

DeRose: Exactly. Hudson Community currently has a grant with us to expand
services to other parts of New Jersey. Its trying to get to scalability.
I think when other organizations that serve the disability community
hear about these successes, theyll try to find ways that they
can leverage that idea within their state or within their community.
The business model of some of our grantees, like that of Arthur Prince,
is in such demand that states are trying to emulate it. That company,
which grows vegetables hydroponically, services restaurants and consumers,
and hires people with disabilities, even has international interest
in South America.

Cooper: A project like theirs can go national, or international, because
theres a clear way to adopt it?

DeRose: Yes. We try to choose our grantees for their ability to grow.
On our end, we drive planning by hiring the very best people we can.
In our research center, we just brought in the thought leader in brain
energy from the National Institutes of Health, Jordan Grafman, MD. When
Congresswoman [Gabrielle] Giffords was injured, he was the individual
the news media frequently interviewed because hes a leading national
expert.

We just hired a leading biomedical engineer from Cleveland Clinic to
come in and work with Gail Forrest in the area of human performance
engineering. Were hiring thought leaders in the fields of cognition
and mobility from a research point of view, because those are the two
areas we focus on.

We also want to ensure we give our researchers the tools they need and
the equipment they need. So were making strategic investments
in products such as the Lokomat, which is a robotic device. In January
2013, were going to be putting in an imaging center for brain
and spinal cord injury, which will be the first and only imaging center
on a rehabilitation campus dedicated to research. You can imagine the
kind of pre- and postdata well be able to collect on therapeutic
treatment options. We can share that data worldwide with other scientists
and clinicians.

The third area that were working on is creation of awareness of
people with disabilities so that America learns to look beyond disability,
and see what every person is capable of accomplishing. Over the last
three years, weve been taking on our own national public service
announcement [PSA] campaigns and, with the mileage that were getting
on 1,100 television stations and 1,000 radio stations, we hope the message
is getting out.

Cooper: What are the PSA messages?

DeRose: Theyre up on our website right now: Actor Daryl Chill
Mitchell agreed to do a series of public service announcements that
focus on spinal cord injury. Since his own injury, Chill has had to
find ways to compensate and move forward. His public service announcements
are about going beyond the disability, and looking at the ability of
an individual. Anything we can do to leverage that even further, to
get families talking about disability, is going to move society in the
right way.

If we educate the next generation, theyre more likely to be open-minded
and advance the products and services that help the 55 million people
who have a disability in America alone.

Lastly, were focused on making sure our organization of about
100 employees works as a team to explore how we can move our ideas along
so that were on the cutting edge of change and research and helping
employment.

Lauren Scrivo: We sponsored two surveys for the 25th anniversary of
the Americans with Disabilities Act. One, which was specifically on
the subject of employment, was launched down in Washington, DC. The
second was launched on the New York Stock Exchange. They showed that
employers are saying they want to hire people with disabilities but
they cant find them. Our survey showed that now, more than ever,
there are lots of educated candidates, and people with advanced degrees.
.

Chet Cooper: Lets talk about the focus of some of the research
being done here. What makes it so unique?

Trevor Dyson-Hudson: Our research is not like youd find in a laboratory
with animals or Petri dishes. It deals with the problems real people
with spinal cord injury face from the moment of injury through life
and, eventually, on to death. Thats how our whole concept evolved.

Elements of care for people with spinal cord injury came out of World
War II, but they werent really organized. It wasnt until
the 1970s that somebody advocated for combining things into a model
system in which all individuals are brought together as a team. In other
words, when somebody is injured today, emergency medical services are
aware of the spinal cord injury and the injured person is taken to an
emergency room with a trauma team that includes neurosurgeons and orthopedic
surgeons.

Cooper: How do they all work together?

Dyson-Hudson: People who are acutely injured are transferred, after
theyre stable, to rehabilitation, and then the goal is to try
to improve their function as much as possible. The ultimate goal is
complete recovery, but just improvement of function is a good start.
We perform studies on people ranging from those who are newly injured
to those who require long-term follow-up.

We look at things that have the greatest impact on lives, such as bleeding
and causes of illness. One area of research thats interesting
is that of respiratory complications, because thats one of the
leading causes of death in people with spinal cord injury. Heart disease
has also become a leading cause of death in people with spinal cord
injury, so we do research there as well.

I do a lot of research with upper-limb pain and over-usage injuries,
because someone whos pushing a wheelchair constantly, or someone
whos in an environment where theyre often reaching, will
develop shoulder pain and other issues. Its all repetitive strain.
So theres that.

Steven Kirschblum: We focus on the translation of work that had been
done in animal models and move it into the human realm. The goals are
to improve quality of life and to decrease medical complications, whether
those be related to mobility or bladder or bone. We work within our
own system and collaborate with others.

Gail Forrest: I work underneath Trevor and Steves umbrella of
improvement of recovery. Our lab aims to more fully understand mobility
function, whether that be walking, standing or reaching. We look at
the consequences as they relate to muscle and bone.

Its easy to get to an end point and see that, yes, weve
improved a persons walking or trunk or standing. But the key is
to understand why weve improved it, because if you understand
that, you can tweak the improvement to modify it to potentially enlarge
the outcome. I work in electrical stimulation. Ive received grant
funding for that, and I work in locomotor training. Im trying
to better understand what electrical stimulation does to muscles.

Working with our collaborators, we also do bilateral magnetic resonance
imaging, computed tomography scans, muscle biopsies, electromyography,
and try to understand how that paradigm of electrical stimulation affects
the physiology of the person and their neurological gains. It may be
that youre able to increase a persons ability to stand or
walk, but how does that happen? We have toolboxes by which to understand
all that.

Within our lab, we predominantly do stroke and spinal cord research.
Dr. Karen Nolan deals with stroke and improvement of mobility, while
my area is spinal cord and understanding how changes affect the central
nervous system. My main goal is to improve peoples ability to
stand and walk, because in doing that you potentially affect bladder
and bone and muscle and bowel function. This all means a better quality
of life.

Cooper: Time and atrophy arent concerns?

Forrest: Even people who are chronic can still regain function, whether
that be standing or walking.

Dyson-Hudson: With some of the early locomotor-training studies, were
looking at people who had residual function below the level of the spinal
cord injury. Somebody who has a complete injury seemingly has less to
work with, theoretically, but even thats a misnomer. Complete
injury doesnt mean the cord is necessarily severed; it means
its been injured so greatly that the person doesnt show
obvious signs of preserved function. But with some more advanced neurological
assessment, we sometimes find some amount of signal is actually getting
through.

Cooper: What was your injury?

Dyson-Hudson: My injury was at the cervical level, so Im technically
quadriplegic. Tetraplegic is the new term.

I have preserved arm function, but I dont have hand function.
Im technically complete. I dont have any preserved
function below the level of my injury. Today, more and more injuries
are actually incomplete. A lot of that is probably due to the way people
are handled to minimize injury at the time it occurs. If someone is
injured in a football game, the medical team is right there, stabilizing
the neck, taking precautions to minimize secondary injury and to preserve
function so that it can come back.......
Continued
inABILITY
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